Today: T+112!!

It’s all a bit strange at the moment, time seems to be going so quick, Hugo is 10 months old! He was only 3 months when we first embarked on our Newcastle leg of Seth’s journey. My 12 months of maternity leave is due to end in a months time. Luckily I have been able to apply for addition time off, so i am not returning to work until January. That will give us time to return home and start living as a proper family again!

Over the past few weeks Seth has really settled into living with us all again. However, he does ask about going home quite a lot. He misses his home and his friends. I am at home at the moment getting the house ready for his return and when we speak on FaceTime he asks for a tour of the house and to look at his favourite toys!

With regards to his eating we are seeing an improvement! He is now eating reasonably well. Most days he eats lunch and dinner. It is still only small amounts however its regular eating. He still struggles psychologically though. He will say that his tummy is rumbling. But then when sat with the food in front of him he uses a number of different distractions techniques to delay putting the food in his mouth. Once he does have that first bite he eats well. We just keep eating our food and let him go through this process. It does seem to be getting a little shorter.

Immunology wise we are pleased that his bone marrow is still showing 100% donor. This means that all the cells in his bone marrow are Nik’s. They test this every month to see the strength of the graft. So far so good!!!
This week we have noticed that his cheeks are a little red and a patch on his arm. This looks like a bit of skin Graft Versus Host disease again. He has been given some topical steroid cream to put on the effect areas and we hope that will be enough. Over the past few weeks they have weaned him off the majority of his anti-rejection (immune suppressant) medication. He was on Tacrolimus, Mycophenolate Mofetil and Prednisolone. He is now only on 2.5mg of Prednisolone on alternate days. This is the smallest amount of Prednisolone he has been one ever!!!! As a restful we are continuing to see he face appear as his cheeks reduce and hopefully his belly will continue to reduce so he gets a much more normal shape.

Virus wise things are looking good. He has had 2 weeks of negative results and he is not longer on medication to treat them. We are just waiting for the all important 3rd negative! This is important as 3 negatives is what they want for Seth to be considered free of the virus – although it may come back later. Although the hope is now that he is not on any significant anti-rejection drugs his immune system will be able to fight these virus’ itself – another excellent out come of the 3rd negative result! FINGERS CROSSED!!

Were getting closer and closer to the time where we will find out whether or not Seth’s Thymus is educating the new T cells. Its something I am thinking about daily. Seth is doing so well at the moment I just want to enjoy it. All his life he has been tired and moaned a lot. Since this transplant he is like a normal boy. No moaning, no winging, loads of energy. It has made us realise that for the past 5 years he has probably felt rubbish all day, everyday. It makes me even more proud of him, as despite that he has had a go at everything put before him. I just don’t want to get too comfortable and then find out we have to get him through a Thymus transplant. If it comes back that the Thymus IS working I can start to relax! FINALLY!!!!!

Seth has been booked in to have his Apheresis line removed on 18th September, this is a big thing for us as this normally happens just before you are allowed to go home! Fingers crossed things continue to go well and we can be home in just a few weeks!!! PLEASE!!!!


  
  

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49 thoughts on “Today: T+112!!

  1. Missy Washburn says:

    Just incredible! I am so happy for your family and the steady walk Seth continues to take….I can not imagine your emotions and will continue to pray home is just around the corner! Thank you thank you for sharing. He looks awesome in these pictures!!! Hugs from Memphis, Tennessee 👍

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  2. Beatrice says:

    I’ve been following your story for quite sometime now and am so happy to see Seth progressing so wonderfully. He seems to be such a happy spirited child! Having lived thru this ordeal with my family in 1977, where my brother was the first North American child to have the marrow transplant for SCID, it is soooooo amazing to see how far medical technology has come. To date , my brother is the oldest surviving transplant recipient He had his 38th birthday in February and is the picture of health!! May Seth continue to heal and grow and be healthier everyday! Will be thinking and praying for you!

    Liked by 4 people

  3. Leanne says:

    Fingers crossed for Seth, he obviously has a great character to be such a fighter at such a young age. What an inspirational character.
    If only everyone could have the same positive out look on life, even when faced with horrible struggles, he still smiles.
    Fingers and toes crossed for the little lad!

    Liked by 1 person

  4. Stacy says:

    It brings a big smile to my face to see how happy he is in these photos! Be hugs big guy keep it up!!!!!! All the love and light in this world is shinning on your handsome face!

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  5. Marita Healy says:

    Oh wow! Great to see him looking so well. Delighted he is making progress with regular eating. I’m thinking of you all and pray that he doesn’t have to get a thymus transplant. 💛💛💛

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  6. Michael hild says:

    I’m thrilled to see that all is going well! I’ve waited patiently for all his updates as I love to see his progression! He’s a strong boy and he’s doing so well. I’m so glad to see that he is progressing so well. I hope all is well now and hope to see more good news for Seth!

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  7. Linda V says:

    This sure has been some journey…When I pray for. Seth, I ask God to remind all that your family has endured, and how little things at the moment seem like they are big things. Surely they are not! Seth has taught my family so much,,and for this we thank you for sharing a little bit of this beautiful boy. I wish you Peace most of all, so that you may be allowed to raise your boys, and watch them grow. You are due so e quiet! way to go Seth!

    Liked by 1 person

  8. Tracy Fraser says:

    What a wonderful inspiration Seth is,and so very very brave..It is such a harrowing experience to see your child so poorly and the feeling of helplessness is unreal..but I am in awe of this special little boy who clearly has the love and support of so many people,and who has touched many of our hearts.
    It is always lovely to hear a happy outcome and his little smile whilst outside playing,speaks volumes 🙂 Long may it continue xxx

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  9. Sarah says:

    It’s wonderful to see Seth outside, playing and smiling and enjoying being a child. Your positivity throughout this has been amazing and I hope things continue to improve so you can once again enjoy a normal life as a family.

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  10. Mitchy (Michelle) Leinen says:

    Such an amazing journey Seth and your entire family have been on. Your family and your story has been enormously inspiring, at times heart wrenching, loving and so filled with hope for others struggling with the same disease. We have been so grateful to you for your ability in the wee hours of the night and morning to share your family with the world Leanne. The outcome has been a gift from the Lord and I truly believe that it is because of your undying love for your child. I have grown to love you all so much and will miss your postings when they come to an end, but at the same time I know that somewhere in the UK is a strong, beautiful young man growing up with a very loving family!! I look forward to see his photos someday when we see a survivors story!!!!! Love to you all and thanks to both you and Nik. You have given my life and my husbands much joy sharing Seth with us. From South Dakota, USA

    PS. I sent the boys Minion hoodie bath towels to the address you gave me last posting. Hopefully they will arrive before you leave to go home.

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  11. Tim says:

    I’ve been praying for Seth for several months now since I saw his placard message on YouTube. What a precious and brave little man he is! He has a friend in the US in me, and I’ll be praying for him continually. Thank you for sharing his story…I’ve been blessed for it. 🙂 (From Vancouver, WA, USA)

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  12. Gary says:

    Thank you so much for updating us. I can honestly it brought a smile to my face seeing wee Seth out and about in the sun with his shades on 🙂

    👍🏻

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  13. lesliesantos says:

    I and my family are continually blessed by your beautiful son of character and strength. I love seeing how gregarious he is when he’s playing. Thank you for the update and being so honest with your emotions and progress. We will continue praying for Seth’s complete healing. We love you Seth and can’t wait to see pictures of you when you are home!
    💛💛💛💛💛 XOXOXO

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  14. Lori DeFrias says:

    Following Seth’s and your families journey has showed me and the world what character, strength and faith is. The unfathomable things you have all been through would make even the toughest of souls falter, but you all handle each day as it comes. I am in awe of the resilience that Seth has shown. There is nothing sweeter than seeing his beautiful face smiling. Sending positive thoughts and prayers for Seth’s continued progress. God Bless!

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  15. Meg says:

    Gosh Seth, I just love your minion glasses. I’d love a pair of those but I know I could never look half as good as you in them, so I’ll just stick with my old plain ones. I love your chalk drawing of someone in a football strip, is it the Newcastle strip ? Your better at drawing than I am, I’m rubbish when it comes to drawing. I’m looking forward to hearing the news that youll be back home. Give your wee brother Hugo a big hug for me please. Hope all your test results come back saying your all better too. 😘 🏃 💛 🚕

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  16. Tina says:

    Our family in Queensbury NY is absolutely thrilled with the latest news. So happy for you all. We will continue sending our warm thoughts your way…hopefully you’ll all be going home together soon!

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  17. Helen Austin says:

    Aww I have been thinking of you Seth all week and I have been meaning to catch up and see how your all going and WOW Seth you are growing so strong and looking handsome as always… Glad you are doing well xxoo 😘🎁🎉🎊

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  18. Cindy says:

    Your are doing so well Super Seth !!! Won’t be long and you will be back home with all your toys and your own bed !!! Keeping everything crossed for you !!! Xxxxx

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  19. angelkhandra says:

    Thank you so much for the update – I am always so thrilled to hear how well Seth is doing! He and your family have been through so much! That happy face always warms my heart. What you said about realizing how rubbish Seth must have felt all of these years makes me think of my son, Morgan, who died of cancer 20 months go today. He felt rubbish for years, too, but we could never get to the bottom of what was going on with him. I am so glad that Seth is getting the help he needs and that things are going so well! It makes me realize that there is still hope and joy in the world! Thank you for sharing your beautiful little boy with us all. I feel like I have another human being in the world who I can love and hope for, so your gift of sharing him is so precious!

    Love you, Seth! Thanks for being my favorite super hero of all!

    Love from Kari and Kimo the dog in Minnesota 💛💛💛

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  20. Nay says:

    Praying when the Apheresis line is removed everything will go great and praying there will be NO NEED for a Thymus transplant, in the Name of Jesus.
    Peace, comfort, strength and healing for the entire family!
    NC Nay

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  21. Sandi Warner Burk says:

    It’s always so wonderful to hear about Seth’s improvement and also how all of you are doing! Wow, I cannot imagine in my wildest imagination how you and your husband do it! How I wish you two could retire and spend all the time with your Prince’s because they would love that so much!!! Have you tried Go Fund Me or would you mind if someone else did? It’s so sad for me to see so many blessed people with tons of money that just toss it to the wind over silly things!! Well, it sounds like the bone marrow transplant did exactly what we were all praying for and tell our Buddy/Hero/Seth we love him to the moon and back, think of him daily, pray for him daily, and send LOTS of hugs and kisses his way daily. Now we have a new member in the family, Hugo, and we can’t leave him out so Seth, hug Hugo for us and tell him how many friends all of you have all over the world! He doesn’t know it yet but he’s learning so you can fill him in that he has a SUPER Special Family consisting of one SUPER Brave mommy and daddy, a SUPER Brave brother, and now he will be a part of your friend family! ((((((( hugs ))))))) for Seth (((((( hugs )))))) Hugo and (((( hugs for mommy and daddy))))))) God Bless you all. ❤ Sandi in Yreka CA USA

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    • LJLane says:

      Thank you sandi. You’re very kind and thoughtful. When the wear yellow for Seth day happened someone did do a go fund me account which was incredibly kind. It meant that I have been able to take the extra unpaid element of maternity leave (from 9 to 12 months) and an additional 3 month unpaid off work. Additionally we have been able to use some of the money to ready our home for Seth ensuring it is in the best possible condition for him. We’re incredibly grateful for that. It has helped us get through this year. Thank you.

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  22. Budd Geiger says:

    Although I am an American, I am of Scottish dissent. My given name (from Biological Father is Scott). and I have been fallowing Seth through his (truly you and the entire FAMILY’s) entire process. I have to say, as the Father of two sons myself, you are one HELL OF A GREAT Mother (and he has a FANTASTIC Father) & little brother too! My sons are grown adults, one has been married two years on 08/30/2015, and I am SO IMPRESSED what a wonderful job you’ve done coping with circumstances I don’t think that I, (nor anyone else who hasn’t gone through all that you have) can even fathom the incredible lengths you’ve gone to, to give Seth as normal a life as is humanly possible up to this point, and I sure hope you know that God chose you to be Seth’s Mother for all the right reasons! You are truly a “SUPERMOM” in my opinion, and my wife and I keep Seth, as well as your whole family lifted up in prayer each day. It has become such a normal thing during my daily prayer time, that I start out with Seth and your whole Family EVERY day, and it almost feels like he has become a member of my family with regard to my daily prayers. It goes: Seth, your whole family, my children and immediate family, then I follow it with any friends, family of friends, etc… Seth is a little Angel 👼🏻, to me, and I will one day have to retrain myself how to start off my prayers 🙏🏻🙏🏻🙏🏻 without Seth being the very first thing on my list each day 😇. I hope that day comes by the beginning of the year, and that I read that his immune system is truly doing what is supposed to, and without all the extra drugs…just with its own natural self, since everything that you’ve all been through has been to build up to that very day 🙏🏻🙏🏻🙏🏻! I am a man of God, and my wife an I educated our children through private Christian School from preschool until High School/College. I’m a firm believer in the power of Prayer, and I’m sure that all the wonderful Prayers that have been said for Seth through this last year (nearly) have certainly come through loud and clear in the name of Jesus Christ! I truly have Faith that God has played such a key role in all of Seth’s INCREDIBLE milestones through these many months and challenges! I’ve never commented on your forum here, but I’m just so incredibly GREATFUL for all the Blessings that God has given to Seth, that I just felt compelled to say so, and to let you know that God chose you to be his Mother for a reason! I just can’t imagine any woman in the world could have done more than you have for Seth, and done it while bringing up a newborn this whole last year too! I pray in the name of Jesus that God sees fit to continue all the miracles that He has seen fit to bestow upon your family and Seth! I pray that Seth grows up knowing all that you have done, and the sacrifices your whole family has made to allow his medical team and God to bring Seth to the point he is at now! I’m just certain that God must have some mighty big plans for Seth, and may he fulfill each and every one of them. In Jesus name I give thanks and continued Prayer. All Glory to God, AMEN! From the Scott/Geiger Family, Bless you all! 👼🏻👼🏻👼🏻😇😇😇🙏🏻🙏🏻🙏🏻❤️❤️❤️

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  23. Lesley says:

    I love to see all the updates about Seth…. Especially when u look at him a few months ago it truly is amazing…. He looks so happy at the moment and just enjoying being a little boy.. And also being a big brother!!! It makes u realise what is precious in life – although u will already know that from the incredible journey u have all been on. Seths journey has made me restore my faith… Little trooper… Looking forward to seeing more updates . 💛💛💛😘😘😘

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  24. marianto230972 says:

    Seth!!! I’m so proud of you and so happy that you are doing so great!!! My prayers are with you and your family that you soon be able to live together as a great family you are! God bless you… Many higs for you my adorable heroe

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  25. Teresa mcdona says:

    That is awesome Seth is improving !!!
    Thank to God and all the prayers Is sustening Seth and your family and all the medical staff !!
    God Bless you all 💛💛💛💛💛💛

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  26. Michael says:

    Good job Seth, you look amazing and full of energy. I pray that you can continue to get better and go home soon. Keep it up buddy. 🙂

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  27. Alexandra Olmos says:

    Hello there, I’ve seen Seth’s evolution for quite a long time now. I am just so amazed by his perseverance and strength at his short age. I’m eager to read sometime in the future “Seth is officially cured!” I want to see him grow up healthy and happy!!!

    Thoughts and prayers to you from Panama City, Panama.

    Kisses

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  28. Sue says:

    Needed a little pick-me-up…I found it in re-reading your update about Seth and viewing your wonderful photos. Seth’s smile is contagious-the best medicine around! Thank you.

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